Approximately 188,000 people with dementia live in residential aged care in Australia, and of these, ninety percent experience behavioural and psychological symptoms of dementia (BPSD) including physical and verbal aggression, apathy, disinhibition, loss of insight, and compulsive behaviour. These changes can cause significant challenges for people living with dementia, their families and service providers.
Behaviour support has been under the spotlight following findings from the recent Aged Care Royal Commission, which revealed an over-reliance on restrictive practices (e.g., chemical, and physical restraint) to manage BPSD, prompting urgent recommendations for reform and person-centred behaviour support practices.
Dr Alinka Fisher from Flinders Caring Futures Institute proposes Positive Behaviour Support (PBS) offers one possible solution. Leading a project funded by the Association of Frontotemporal Degeneration, Dr Fisher’s research focusses on examining the effectiveness of PBS training for staff and family members in supporting residents with dementia in aged care.
PBS is an approach to address challenging behaviours through enhancing a person’s quality of life and offers a comprehensive framework for clinical intervention. The benefits of PBS have been reported for people living with various disabilities, including intellectual disabilities and brain injury, such as reduction in challenging behaviours and improved relationships and community engagement. Preliminary findings also suggest this may be an acceptable approach to providing person centred behaviour support to people living with dementia.
In collaboration with University of Sydney and UNSW, Dr Fisher examined current practices and developed and piloted a PBS training program for staff and families who support people living with dementia in residential aged care.
Highlighting the significance of the research, Dr Fisher stated, “This research plays an important role in examining potential solutions to an issue of national priority. There is an urgent need to improve behaviour support services for people with dementia – and build workforce capacity in delivering person-centred and non-pharmacological interventions that promote human rights.”
The project builds on Dr Fisher’s previous research in brain injury and dementia, including a PBS pilot study in frontotemporal dementia and the development of a PBS family education program for adults with brain injury, which has since been adapted and piloted with family carers of people living with dementia in community settings. These initiatives, funded by various organisations including Dementia Australia, laid the foundation for the current project.
This project consisted of two phases. In the first phase, Dr Fisher and her team conducted a cross-sectional survey to gain insights into the experiences of those providing behaviour support to people with frontotemporal dementia and other dementia types. The results, despite a relatively small sample size, provided valuable insights into the challenges faced by support providers, including a lack of time and staff and the need for more training.
The second phase involved the development and piloting of a PBS training program for support staff and family members across three aged care organisations. The program, delivered online and in person, aimed to increase confidence and skills in providing behaviour support.
Results from the pilot program indicated a high level of satisfaction among participants, with increased confidence reported by almost all support staff and family members. However, concerns were raised about the existing gaps in knowledge and skills within the behaviour support workforce and the need for system changes to enable effective practice.
Dr Fisher emphasised the unique aspects of the project, stating, “This is the first PBS staff training pilot in a residential aged care setting in Australia and it has the potential to inform practice and policy changes.”
The findings have already gained interest from policymakers, supporting collaborative planning with industry partners for future grant proposals.
In alignment with the goals of the Caring Futures Institute, Dr Fisher’s research seeks to build better lives, communities, care, and systems by addressing the urgent need for improved behaviour support in aged care settings. The long-term impact of the research is expected to improve the lives of people living with dementia in residential aged care, contribute to meeting legislative requirements, identifying areas for system improvements, and establishing a universal PBS approach across different sectors.